Wednesday, October 30, 2013

Getting to Know Julia

Julia is our sweet 15-week-old daughter.  She loves to smile and gurgle at mommy and daddy, and she has a newfound fascination with "The Very Hungry Caterpillar" stuffed animal.  She is sweet and calm, and she rarely cries in a manner typical of a 4-month-old.  She does use increasingly loud vocalizations to get our attention, and we are loving the way that she is communicating with us.  She has just begun occupational therapy and is working on skills like holding her head up and feeding.

Julia also has Down Syndrome (DS).  She has a heart defect that is common for children with DS, called a complete Atrioventricular Septal Defect (AVSD).  Roughly 20% of children with DS have this type of defect.  When Julia's body was forming, her heart did not form correctly.  Rather than having 4 separate chambers in her heart, Julia has essentially one large chamber.  The walls that are supposed to separate atria and ventricles are incomplete, and instead of two valves regulating blood flow between atria and ventricles, she has only one.

Normal Heart

Julia's VSD (the ventricular, or lower, part of the defect) has been described as "massive."  Her heart is ever so slightly unbalanced so that her left side is a bit stronger than her right.  All other components of her heart (arteries, veins, structures) are in perfect condition...and we should know, because this girl has already had lots of tests and imaging done to determine what her surgical needs are!

 Complete AVSD

This heart defect impacts children quite significantly before the repair.  Instead of the oxygenated and deooxygenated blood flowing methodically through the heart and out in to the body, it mixes together because of the lack of walls and appropriate valves.  So, Julia's lungs get quite a bit more blood flowing to them than she should, making it hard for her to breathe correctly.  To compensate for this, Julia has been on Lasix (a diuretic) since she was 2 weeks old, and this has helped her quite a bit.

Repaired AVSD

Problems Julia has had resulting (at least in part) from this heart defect included difficulty feeding, difficulty rousing, and weakness.  The first month of Julia's life was very, very hard, because feeding her was so challenging.  She appeared to be suffering, and she probably was.  She still struggles with feeding in some ways, but she is definitely getting enough calories, though she is only 10lbs.  What many of the other "heart moms" tell me is that these children are like different babies once they have this heart surgery.  Suddenly, all those calories that were sustaining a failing heart are now able to be used for more fun activities, such as movement, interaction, and getting nice and fat!  

The early the NICU

Nationwide Children's Hospital, in Columbus, OH, has the #5 pediatric cardiology program in the nation.  Julia's surgeon, Dr. Mark Galantowicz (google him!), is a pioneer in many different types of pediatric heart procedures, including "bloodless" heart surgeries, where no blood transfusions are required.  He flies all over the world giving talks and performing procedures on children who greatly need them.  We feel incredibly blessed that all we had to do to get this surgeon to operate on our daughter was...ask.  Just ask.  Our cardiologist assured us, "This surgery is the bread and butter of pediatric cardiothoracic surgeries."  In other words, it's very common and straightforward, and most of the time, outcomes are great.

Simply the sweetest (15 weeks old)

There are several possible complications, but most of these are pretty unlikely.  She could require more surgeries if the repair doesn't go well and she still has a lot of leakage from her heart.  This isn't terribly likely for Julia, as she has very minimal leakage right now.  She could also require a pacemaker if the electrical rhythm of her heart is disrupted during the surgery.  The greatest risk for Julia is actually something that would be managed with medication.  Because she is doing so well right now, we know that her body has compensated for the defect by increasing the lung-artery pressure.  In fact, her heart defect is so large and her lung-artery pressure is so high that she doesn't have an audible murmur - even the cardiologist can't hear it.  This is good right now, but when the defect is repaired, she will likely have to be on medications to help her body get back to normal.

She will be on several medications for about a year, and eventually we will only see the cardiologist once annually.

Julia's surgery is scheduled for Wednesday, November 6.  We will likely be in the hospital for about a week as her body recovers.  These kids recover amazingly quickly, though weeks 2-3 at home are the most crucial in terms of her risk of infection.  Because of this, we will likely be quarantined at home for about 4 weeks to avoid infection.

Why am I doing this blog?

I decided to publish this blog for three reasons:

1.  To give people an easily accessible means of knowing how to pray for us.

2.  Because I want to have some kind of memoir of this wild time.

3.  I benefited so much from other blogs who gave me play by plays of their child's heart surgery.  I wanted to be another resource for others who may need that encouragement.

I intend on publishing a lot during the surgery on November 6 and the following week or so we'll be in the hospital.

Some Things We Are Learning

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*I'm not sure why the video isn't showing up.  Please click on the link to hear Shane and Shane's "Though you Slay Me."  It's powerful.

It is difficult to summarize concisely all of the things that the Lord has been teaching us in this season of our lives.  It's been a hard time!  This song captures a lot of the emotions that we have been feeling.  When Peter says in John 6:68, "Lord, to whom would we go?" that echoes a lot of my thoughts.  Though I don't understand all of the trials we are facing, He is sufficient for us.

Deuteronomy 30:6
“The Lord your God will circumcise your heart and the hearts of your descendants, so that you may love Him with all your heart and with all your soul, and live.” 

This verse speaks so deeply to us right now.  Our hearts are being fully, painfully dedicated to the Lord though this trial, as we wait for our daughter's heart to be physically perfected.  We trust that He will draw us to Him so that we may live more fully.

From Paul Miller's book, "A Praying Life:"
"Another author of an otherwise excellent book on prayer said that prayer was mainly about us being with God and not about God answering our prayers.  As an example he mentioned that 'mothers in the days of high infant mortality used to pray desperately that their children would not die in infancy.  Modern medical techniques have put an end to those prayers in the West.'  Maybe.  Or maybe modern medical techniques were developed in the West because young mothers in the West were praying for the lives of their children."
[You can imagine how I reacted to that one!  Thank you, Lord, for the many mothers who have prayed for their children.]

Sunday, October 27, 2013

Expecting Julia

The following is reposted from an earlier blog entry in April.

Some of you know that I'm reading the book "Expecting Adam," by Martha Beck.  The author learned that she was expecting a baby with Down Syndrome and chronicles her thoughts and experiences, some of which she said were magical and/or spiritual.

Today we had our own magical moment.

We went to Duke Gardens in Durham, NC, with Taylor's parents.  While walking along a path, a small, elderly Asian woman saw us taking photos and offered to take a family picture for us.  We chatted with her for quite awhile about Natalie, about the coming baby, and about our family.  She kept saying, "You're so lucky.  You're so blessed.  You're so fortunate."

Suddenly, I felt child-size arms around my waist.  I looked down, and an Asian girl roughly seven years of age was hugging my belly.  Staring right at my belly button, she said, "Hi!" and skipped away.  It was only after she moved along that I realized...she had Down Syndrome.

Welcome to the world, Julia.  Your life has a beautiful purpose, dear one.